CDH Listservs Archives - Wed Jul 21, 1999

Shane had been admitted to the hospital for the summer...

Hi again everyone,

I wanted to seperate this e-mail from the list to keep with the "stay on
Subject topic rule for the lists". : )

I'll be at the hospital and out of the office for the next few weeks.
One of the managers of Office Depot heard of my computer withdrawals and
CHERUBS and gave us a great deal on a laptop (which was on our wishlist
so we could house the database on it and have an emergency backup.
YEAH!!!!). We weren't planning on getting one this soon and were trying
to get a grant for it, but the Lord works in mysterious ways sometimes
and I guess He knew that an entire month without working on the mail and
e-mail and database would far too much to handle. So, I do have
computer access now, but I can't get on-line but a few times a day to
keep the hospital room phone line open so it will be hard to catch up on
on-line work.

The ECMO video tape that Judi told you all about- We need professional
video tape by Friday. No home videos, no videos of strangers- 20/20 has
to get copyright permission and all the legal i's dotted and t's crossed
so they were very specific about this. Please contact me directly if
you have a video. My temporary number (hospital number) is
919-966-5355. Please do not try to contact 20/20 yourself, I'm in
contact with the reporter and he'd rather all suggestions and/or video
ideas come through CHERUBS' main office first so he doesn't get
bombarded.

E-mails- well, I was almost all caught up (3 e-mails to go) and then
wham! I just plain give up on ever having all my mail answered within
24 hours, it's not humanly possible. lol. So, as usual, my opening line
to e-mail responses is back to "Sorry it has taken me so long to
respond....". Over 500 e-mails to answer, and that's with the
listservs on digest so please bare with me. My e-mails are on several
disks, some on the laptop, some of them in a different browser- if I
overlook an e-mail, please forgive me and remind me or let me know if
your e-mail hasn't been answered in a week. I've scanned over most of
them and my thoughts and prayers are with a lot of you that are having
tough times right now.

Snail mail- it's going to take even longer with regular postal mail
because I am an hour and a half away from our PO Box. New members, I
will have your new member packets to you as soon as I can. If possible,
I will try to send as much printed material as I can by e-mail (matches,
Parent Reference Guide, etc) so you won't have to wait.

Web Site- I was in the middle of updating it when we ended up here. I
know I promised a lot of you that I would have your data updated and I
promise to have it done by Friday (barring any other emergencies).

With Judi out of town and me here, CHERUBS' is going to be on "cruise
control" for the next few weeks- focusing mostly on emergencies and
trying to get whatever else done that we can when we can. All committee
meetings will have to be postponed for a little while, but all volunteer
work will continue. Hopefully, I won't fall too far behind (and thank
you to those of you who volunteered to help me catch up, but it's mostly
e-mails, postal mail and things I can't "pass the buck" on, but trust
me, I have your names and won't hesitate to contact you if I have
something that I don't absolutely have to do myself) but please bear
with me if I do. : )

Thank you all of you who responded to the e-mail about the database- it
is a HUGE help!!!!!!!

State Reps, if you haven't, please respond to my last e-mail sent to you
about 2 weeks ago- I haven't read all my mail yet, but I only had 3
responses and we need to get the ball rolling. Please make sure to
reply only to me and not the list or the rest of the State Reps.

Listserv- please remember to follow the lists rules. Before Shane got
sick I had an e-mail about this to the list half-written and I changed
the setting on the lists so that no attachments could be added to
e-mails sent to the lists- if any of you wondered why your attachment
wouldn't go through or why your e-mail looked plain, that is why (at
least that is if I set it right). Other than attachments the only rule
problem I've seen was the subject heading- please make sure it's
accurate with what's in your e-mails so that no parents will have to
read more than they can/want to handle.

Phone Calls- I won't be getting phone messages except about once a week,
so please e-mail me until we get out of the hospital if it's really
important and you can't wait for me to call you back.

Since Shane is in the hospital, there's not telling what will happen
next so I may disappear for days at a time, depending on how he's
doing. I'll only be able to work when he's asleep so it will take me a
good while to catch up. So, if it's an emergency, please call me at the
number above.

Please ignore the typos and grammatical errors in these e-mails, too
tired to proofread tonight. I think that's it! THANK YOU all
soooooooooooooooooooooooooooooo very, very, very, very much for help,
prayers, and support. I would be so incredibly lost and alone without
you all and knowing that you're here and truly understand why I'm going
bonkers. : ) (Heidi, I saw your sign off on the lists... move over,
not gonna let you go crazy alone. haha).

Love,
Dawn T.
(mom of Shane, age 6......)

The Book

I am in the beginning stages of writing a book about Shane and the beginning of CHERUBS... they are too intertwined to not be about both.  

It's the first of 2 books I am writing, with help from some writer friends.   The 2nd book will be about the trials and tribulations of running a charity and rebuilding my life after losing my son.  It's pretty much like my life - as it's separated too into "Before losing Shane" and "After losing Shane".   The first book is about him.  The second book is about me.  

I don't know how long it will take me to write them but I'm starting.  I don't know when they will get published, but they will.   I'm not a "flowery" writer by any means... I'm a heart-on-my-sleeve too-honest-for-my-own-good person and my writing reflects that.  It's emotional, it's raw, it's honest, it's all the joys of having my miracle baby boy and all the pain of losing him.   Which means reliving all of it.   I'm not sure I'm ready even though he was born 20 years ago.   But I need to do this, for him, for me, for CDH awareness.

I've been going through all the medical records, the hospital audio tapes, playing videos, his cedar chest which is filled with his toys and books still and sits near my bed.   I've even going through the old audio tapes of me and his dad singing karaoke with him playing along and humming into the microphone laughing.  Who would've thought that sitting on our living room floor with a stereo system and our 6 yr old singing Garth Brooks songs would turn into something so incredibly precious.

I think going through all this stuff has probably made his birthday harder this year.  I can admit I am a basket case this year.  20 years... it can't be that long ago.   It truly seems like yesterday I was painting Precious Moments characters on his first birthday cake or shopping for a Big Bird cake pan for his 4th. 

Facebook makes it harder, no doubt.  How do newly grieving parents these days survive grief and Facebook????   Turn it off, parents... save yourselves the pain of seeing all the happy posts about new babies and all the terrible posts of horrible parenting. 

Turning 40 this year without any other children makes it much harder.   I guess having a perfect child for 6 and a half years was enough gift and I shouldn't expect more with such an incredible gift.  But it's hard.  Watching my step-sons and nieces and nephews hit all the milestones Shane will never have.... it's hard.  

Life isn't fair.   Good people get hurt.   Children sometimes die.   Horrible people get to be parents and good people have empty arms.   Someday God will explain it all to me but in the meantime, I know He has His reasons and it's all for a greater good.

So many people are posting and sending me messages today and it's so wonderful to have my little boy remembered.   I am very, very blessed to have some incredible people in my life.   Thank you, everyone for wishing my little boy Happy Birthday.  <3 p="">
Back to the books.....  I am going through CHERUBS old listservs.  Wow.  Time warp.  

http://health.groups.yahoo.com/group/cherubs/

Here is my son's last 6 months all journaled out to other CDH parents.  Here is the beginning of the CDH community.  

I'm going to repost some of the posts I wrote about Shane here.   <3 br="">

Happy Birthday, Baby

20 years ago I gave birth to the most amazing little boy a mom could ever ask for.   You were the love of my life, Shane.  I miss you more than words can say but I am so grateful for the time we had together.  Happy Birthday to my hero.

Love,
Mommy